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September 2013 Archives : Myeloma Voices

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Earlier this year the IMF launched the Black Swan Research Initiative, a breakthrough approach to finding a cure for myeloma. Following in our footsteps, others are ramping up their myeloma research efforts. This is great news for myeloma patients, and in science it's particularly useful to have lots of people examining data in different ways.

But BSRI's unique approach to finding a definitive cure for myeloma continues to set it apart from all other myeloma research efforts in the following fundamental ways:

  • BSRI is an actual research project aimed at finding a functional cure for myeloma, not an open-access platform to support external research. 
  • A core tenet of BSRI is that many patients might be cured and don't know it - because previously we have lacked the sophisticated tests necessary to determine that Zero Minimal Residual Disease - MRD-Zero - has been achieved. The change in available testing will inform and refine BSRI protocols to highlight a pathway to a cure. Using the latest procedures involving flow cytometry and full DNA sequencing, we will be able to detect down to less than one cell per million of myeloma.  Thus, we can identify who has been cured, and what combinations of therapies led to that cure.
  • Using Big Data to look for individual differences, as others are doing, is expensive, difficult and - if the process includes developing a new drug for each patient - time-consuming. What makes more sense is BSRI's strategy of using Big Data to find the similarities among patients in large, distinct groups. If the BSRI testing protocols find, for example, a patient with "Category A" characteristics has reached MRD-Zero, then the same treatment course can be applied to others in Category A. Will the cured patient's therapy regime work on all similar patients? No - but when it does work that will yield a new, more refined set of characteristics, a "Category A-1" that responds in like manner. And so on.
  • Others are attempting to use individual molecular data to develop new targets for drugs. In other words, find a mutation, target the mutation. This sounds great but is a long, arduous process that in general does not work. Better to avoid the mutations that occur in myeloma cells over time by treating the myeloma early. To do so, BSRI proposes administering therapy that is known to work in combinations of multiple mechanisms. Improved detection of the disease and its clones will allow us to monitor the therapy - and determine what's working - from an early point in the disease.

Understanding the molecular genetics of minimal residual disease (MRD) and using the best combinations of drugs to eliminate the MRD will lead to cures. To get there, we are currently carefully designing precise studies in clinical trial settings that will begin early next year.

In the meantime, we wish all myeloma researchers success. When it comes to the Black Swan Research Initiative, we expect success.

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF Hotline staff instead. Questions are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate. To contact the IMF Hotline, call  800-452-CURE, toll-free in the US and Canada, or send an email to hotline@myeloma.org. Hotline hours are 9 am to 4 pm PST. Friday summer hours are 9 am to 3 pm PDT. Thank  you.

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We know that the Black Swan Research Initiative is critically important, so we want to keep you up to date on our plans and progress. For many patients, their future care may depend on the outcome of our research, and we are often asked for answers before the research has even begun. Unfortunately, results are not immediate, but we do have an aggressive schedule, and we expect to have initial answers early next year about the role of MRD-zero--and why it's important to finding the cure.

What We Are Doing Now

We have already completed our work on how to define and identify MRD-zero clinically. Now we are working on standardized testing for MRD-zero, and we are looking back over previous studies to glean new information about MRD-zero and responses to treatment that may point toward a cure.

Qe are incorporating new information from other studies into our BSRI program. One example is the recently completed study on smoldering myeloma from our colleagues in Spain. We are also looking at new drug combinations already in clinical trials as a guide for our own next steps to find the cure.

Within the next two months we will have two in-person meetings of our international BSRI team: a mini-summit in New York in October and a full BSRI team meeting at ASH in December. While we work together continuously via phone and email, these face-to-face meetings give us the opportunity to exchange ideas, challenge concepts, and drive the project forward.

We are finalizing contracts for partial funding for BSRI. This is essential for acquiring the most sophisticated analytical equipment needed for our research, and to support the teams of researchers.

Personal donations are still the mainstay of the work at the IMF and we are planning to include BSRI at our annual fund-raising gala in November.

What You Can Do Now

For some patients, waiting is not an option. What can you do now? The most important step you can take for yourselves and to help your fellow patients is to take part in clinical trials. More than 1,300 trials are listed on www.clinicaltrials.gov. Not all are still recruiting patients, some are for a specific subset of conditions, but that's a lot of patients needed from a relatively rare cancer. And of course, we hope you'll be available to take part as soon as our clinical trials begin.

Also, we hope you will please consider donating to the Black Swan Research Initiative. With your help, we will soon bridge the gap from long-term remission to cure.

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF Hotline staff instead. Questions are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate. To contact the IMF Hotline, call  800-452-CURE, toll-free in the US and Canada, or send an email to hotline@myeloma.org. Hotline hours are 9 am to 4 pm PST. Friday summer hours are 9 am to 3 pm PDT. Thank  you.